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Old 02-19-2016, 07:05 AM   #1
Lauriesh
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Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

Tracy, I went off herceptin in jan, 2015 after being Ned for 4 years.
I had my scans in nov, still clear, so will be Ned for 5 years feb 23.

Laurie
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diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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Old 02-19-2016, 08:31 PM   #2
Whonoze
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Join Date: Oct 2008
Posts: 41
Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

I've been on Perception for 9 years. I discuss going off with my one. She said she would be comfortable with me going off. The problem is that there is really no data to support staying on or going off at this point. I have minimal side effects so will stay on and keep looking for evidence either way.
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Old 02-20-2016, 09:38 AM   #3
scrunchthecat
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Join Date: Aug 2015
Location: Miami, FL
Posts: 19
Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

StephN - Which vaccine trial did you participate in at UWash??
I am being considered for one at NIH: NCT01730118.

sj
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June 2015 - Stage IV, HER2+++, HR-. Mets to liver, assorted lymph nodes.
June 2015 - Begin THP
October 2015 - End THP, begin H&P. PET-CT shows resolution of mets to liver & lymph nodes.
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Old 02-22-2016, 01:57 PM   #4
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

Hello SJ,
Glad you are having good results on your treatment. A vaccine trial could be a good fit for you at this juncture.

Yes, I have been off Herceptin and all other treatment (except twice-yearly Zometa) since Dec. of 2008.

The vaccine trial I was in was a peptide trial with an immune system booster. They have new trials now, but I am not sure what they all are.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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